Diabetes Billboard

Diabetes is a billboard in my life.

Sometimes, it is on the side of the road and I see it there, reminding me of things that need to be done to help my son who has Type 1 Diabetes. As I drive to work its presence in the distance will remind me that we need to book an eye appointment for him, or that he is about to run out of needles for his insulin pens.

Some days, it’s a bit closer to the side of the road, when I’m seeing how many things my son needs to do and I know some days this is hard for him. Those days I’m very aware of it as I work out how to best help my boy do the things he wants to do.

Other times, like recently, it felt like my nose was pressed right up against that billboard hiding everything else from my view, stopping me from moving forward. I don’t have diabetes but after five years of watching my son live with it, it can loom large in my world.

When your child is growing and changing, doing their best to live a full, active life with a chronic condition, so many judgements are made. Some lack an understanding that there is a person in the middle of this condition.

Loneliness and total despair only begin to describe the feeling of having your nose pressed up against that diabetes billboard. I can only imagine there are many others out there who have felt the same. What choices do you have when it feels like there is no way forward? The only choice is to look back over your shoulder.

I was so busy looking ahead, trying to figure out how to get through this horrid time that I hadn’t thought to do this until crisis point was reached.

When I looked over my shoulder, I discovered a small unexpected group of people out there, following at a distance. I found comfort and knowledge in their open arms. I just needed to ask, and through their wisdom, love and support, calm returned and new way forward was found.

I am so thankful to this small crew of amazing people. They know who they are and the support they gave to my son and to me. I will never forget this and next time I will know to look over my shoulder. You should try it, you will hopefully get the best surprise.

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His hands

At birth his little premature hands were so fine and fragile with nails only part formed. There was a strength in the grip as I held him in my arms and looked at his tiny self.

He was a hand holder, always. Sidling up to me and grabbing my hand as an unsure toddler. Tickling my hand in a secret code when we both knew we were stuck somewhere but had to stay. Squeezing my hand tight to try to make me yelp in pain was followed by peels of laughter.

Watching those hands learning to master first cutlery, then a pencil and waiting for the elusive primary school ‘pen licence’ which was never awarded due to a stubborn personality streak which would not see the necessity of writing neatly.

Sport then occupied those hands: dribbling a basket ball, throwing a cricket ball, catching a rugby ball. Always amazing control, and coordination.

Then aged 13 those hands took on another role. Sharp needles pierced fingertips; a finger sometimes needing to be milked like a little udder to produce a glistening drop of blood which would then direct the course of the next few hours with insulin and carb calculations following on.

Those hands seized the blood glucose meter on the second day, jumping as the spring released the needle, eyes wide in fright as a plump drop of blood sprang out onto his finger. From then on, other than when asleep, the meter was his and his alone.

My hands have danced with his hands in various strange nocturnal waltzes in all kinds of crazy locations: from tents to long distance planes. Sometimes those hands do not want to come out, especially when tucked under a pillow in the depth of a cold winter’s night. An unsightly arm wrestling match can ensue but it is never the best of three as the meter must win, a number must be had and then sleep can be resumed.

I know these hands intimately. I know which fingers he prefers to use for checks. I know his cheeky smile as he sticks up his middle finger at 3am, half asleep. I know the part of his fingers that the needle hurts least.

Over time, the tips of certain fingers have grown hard and dots mark their surface. They are men’s hands now. Where once his tiny hand nestled in mine, both of my hands can cradle one of his.

There are times in the early morning, when I sneak in to do a check before a busy day begins. I feels his hand’s warmth and sense the pulse and life force within it. These are moments of thanks and gratitude to the universe for keeping my boy safe.

In the next couple of years my boy will leave home. I will watch him pack his bags and those hands will carry bags out of our home and into an exciting future.

That’s exactly how it should be.

The Boy and the Egg pull some moves!

So here we have it. Remember The boy and the Egg? I wrote this not long after my son was diagnosed. He spent his 13th birthday in hospital a couple of days after his diagnosis. How times have changed! And how they’ve stayed the same!

So here we are over four years post diagnosis. How is my boy and how is that Egg? I’m so pleased to report that both are intact! Initially the worry was how my boy could play sport, navigate school, hang out with friends and still manage to take care of the Egg.

These days, the Egg goes on dates. Through what I can only imagine are passionate embraces, the Egg has not been smashed. The Egg has also been there when a heart was broken. Not my boy’s, but an amazing young woman who was his first serious girlfriend! He had sat with the Egg in his hands as he tried to think over how to be diplomatic and delicate in ending this relationship. The Egg lost a fierce protector when the relationship ended but having someone to share the Egg with is not enough of a reason in itself to keep a relationship going. (Note to self, as the mother of three boys, do not fall in love with your son’s girlfriends!)

The Egg is a frequent attender of parties where my boy can hold a beer in one hand and the Egg in the other and can apparently pull some dance moves at the same time. How amazing and terrifying is that? In order for this to happen, we had to have some Egg and Alcohol sessions at home. We gradually increased the number of beers my boy had over the course of a few weeks, making sure he held on to the Egg and never left it where it could be smashed. We checked frequently throughout the night that he hadn’t rolled on it and smashed it and so far so good! We have had to be totally realistic about alcohol. We are living in the real world and facing the challenges in a way that reflects the reality of our boy’s life.

Driving with the Egg on the dashboard presents a few challenges. Keeping an eye on it and the road can be hard, especially when you are a learner and you have a parent there with you, trying to explain what to do. My boy has recently moved from an automatic to a manual car and those gear changes certainly increase the adrenalin and those kangaroo jumps can be scary and are accompanied by pleas from my boy that I stop swearing.

Working in a fast food outlet with an Egg in his pocket has been interesting. Finding a part time job that is permanent , rather than casual, has meant that employers have had to acknowledge the existence of the Egg. They have been offered the chance to be trained in Egg Preservation but it hasn’t been needed so far. The main thing is that my boy can take that Egg out of his pocket if he needs to as it isn’t a secret. He can take time out on a shift and make sure it’s alright. He gets holiday pay and sick pay which is an incredible thing at this age and offsets the lower hourly rate.

We live in the country and many of my boy’s friends live in other towns and villages which are not necessarily close by. This means he has days and nights away and as he has expanded his social circle it means the we do not necessarily know the families of these friends. Trust and honesty have never been as crucial. We have a little kit bag which serves as a nest for the Egg. When he goes off, my boy packs it full of everything he may possibly need for a couple of days and promises to text us regularly. He knows, if he has a big day or evening, that he’ll need to wake up during the night and check on the Egg.

Our boy has realised this summer that having the tiresome responsibility of the Egg does not preclude him from all normal activities. He has taken on a more active role in looking after the Egg. We are still there as the Egg Support Squad in the background but as he gets ready to finish his last year at school and move on to a big exciting future, I feel like he has the world at his feet and a good grip on that Egg!

Sourdough, Simplicity and Sisterhood.

I’ve been learning how to make sourdough and slowing down enough to enjoy the steps involved has given me lots of thinking time.

There’s a real simplicity to the process which would have frustrated the hell out of me a couple of years ago but I am enjoying it. If I rush, I get it wrong and the sourdough does not work out. I keep the starter in the fridge and on days when I’m not making a loaf, I try to remember to feed this precious starter in order to keep it alive and thriving.

I wake up at crazy times, hoping that the proofing process has worked its magic overnight and that the dough has risen nicely. It’s the best way to start the day. I put the oven on, heat up the cast iron pot in the oven and a bowl of water on the oven floor to create the atmosphere which results in the perfect crunchy crust. 

It’s a very low tech procedure which modern technology has not replaced. It seems to thrive on the love and care! Am I turning into some crazy old hippy?

All this puts me in mind of parenting! The other word for the starter is the ‘mother’. Those who are into making sourdough guard their ‘mother’ with care. Some have been on the go for generations, feeding entire families for decades  I’m sure you can see where I’m going with this.

The mother must be nurtured and cared for or the bread will not work and what is produced will become inedible.

I am nurturing three teenage sons. This requires a lot of effort, consistency and care to produce the desired results: good men! I need to be on form for this to happen. If I am not taking care of myself then I cannot look after my boys. 

As part of what I do, I am the mum of an almost 17 year old son who has Type 1 Diabetes. Whilst his brothers are equally loved, there is an extra element of care needed here. It is what it is! He takes care of himself and I’m looking ahead and trying to envisage a time when he leaves home. In the meantime, I am catching a few early morning lows as I get up to put on the oven and the thinly sliced sourdough and egg combo that we’re having for brekie seems to be agreeing with his bgls. That’s what we call a win, win!

The Diabetes Australia #WDD2017 campaign #SuperSHEroStrong caught my eye today just as I was kneading my sourdough and so I would like to send my love, my thoughts and a whole heap of sassy sisterhood out to all the women in the diabetes community: those who have diabetes, and those who support others with diabetes too!

Hello, I give you my son’s heart and his non functioning pancreas. Please treat both with care!


Hello, you don’t know me but I know that you know my boy. You two spend hours on snapchat and messenger chatting about who knows what. I know there have been face to face meetings too. I think it’s time we had a chat! 

Here is a little questionnaire I’d love you to complete. Don’t look alarmed! It’s all cool!

Part A) Stand on one foot and answer the following questions whilst hopping:

– 24 + 57 + 63 + 82, then divide by 2, then divide by 15. Got that? Good girl! 

– 29 + 81 + 12 + 75, then divide by 3, then divide by 15. Still going? Well done! You may proceed to Part B.

Part B) How deep a sleeper are you? How many hours sleep do you average and do you wake up to alarms? Please write your answer in the space provided below.

Part C) Do you prefer routine or have more of a devil may care attitude to life? Think back over the last week please and write down the times at which you ate breakfast, lunch and dinner?

Part D) Imagine you had a cute boyfriend. For easiness sake let’s call him ‘son of mumoftype1’! A bit of a mouthful, I know but bear with me please! Imagine this boy suddenly collapsed. Which number would you call? 

Part E) If this boy felt brave enough to tell you that he had a medical condition called Type 1 diabetes, how would you respond? Circle your preferred response.

– nod your head and ask a few simple questions.

– say “that’s what my best friend’s uncle had and he died.”

– run

Part F) If you have made it this far, you are a keeper and I ask only one thing of you. Please don’t break his heart! 

Times they are a changing as the song says! I am really enjoying seeing my boys turn into men but I have suddenly become aware of how important a role potential girlfriends may have. Excuse my tongue in cheek look at this! 

Diabetes Blog Week- Day 2 – Feeling Lucky

The Cost of a Chronic Illness – Tuesday 5/16  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I find it hard writing this post. We live in Australia and if I were to complain about the little things that annoy me I would sound pathetic. There are people in the world who do not have access to insulin. This is why charities like Spare a Rose are so important.

I know there is such an awful situation in the USA at the moment. I follow what is going on on Twitter and I feel sick for everyone there. The stress of not knowing if you will be able to afford insulin or the sacrifices that will need to be made must be very scary indeed.

I do not know the feeling of worrying about being able to afford insulin. My son has a healthcare card which gives him an even greater reduction on his insulin, meter strips etc for as long as he is a student. We have a supply drawer full of needles, meters, ketone strips, glucagon etc.

We have access to an amazing team locally who will see us as often as we need and are available via text and email when things go wrong. Our paediatrician is available and has a good knowledge of diabetes. We see a paediatric endocrinologist every six months. How lucky are we?

My son, if and when he wants to, can have a pump to use to manage his diabetes. We are lucky enough to be able to afford the private health care which would make this possible.

A recent bitter sweet victory was the funding of CGMs for under 21s. Why bitter sweet? It’s fantastic for under 21s but what are they expecting to happen when those kids who have become reliant on the CGM turn 21? A lottery win? What about adults managing their Type 1 diabetes? I can only imagine it must be very hard for them if they want a CGM and cannot afford the costs. We can only hope that this subsidy will be granted to all those with Type 1 diabetes.

We have access to great food and have jobs which mean we can eat well every day.

I know there may be others in Australia who may not feel so lucky. I can imagine our story would not match the experience of everyone here.

It is so sad that our experience is not that of all those who have diabetes. I only wish it were!

 

Mission Accepted : The (Re)quest for a Replacement Blood Glucose Meter- Diabetes Blog Week – Day 3

The Blame Game – Wednesday 5/17

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! 

This is a blog post I wrote a while ago but I have relived this conversation again recently.


Background: 15 year old boy with Type 1 diabetes. Great kid with two settings: sloth and clumsy giraffe on speed. There is no way to predict which setting is in operation at any moment.

Motivation: Two Blood Glucose Meters which both, within a space of a week, show signs of not being reliable. This is not wonderful when your son has Type 1 diabetes. A call to the helpline will surely be able to fix this? 

Setting the scene: Your lunch break is 45 minutes. Mobile reception at your work is dodgy to say the least so calls have to be made from a phone in the middle of a busy staffroom. There is a tiny surface, about the area of a phone directory, where you can balance a notebook or iPad if you need info for your call.

Reality: 35 minutes spent in a queue. You do not have lunch as you didn’t think to bring your sandwich to the phone. You did not fit in a quick loo stop before you got on the phone and you are teaching for the full afternoon. A miracle occurs: you make it to the front of the queue and your call is answered.

Main characters

1) aforementioned high school teacher, starving hungry, in need of a wee and slightly on edge in case the Blood Glucose Meter her son took to school stops working.

2) extremely patronising lady who has clearly done a training module on how to talk with empathy to harassed customers.

Dialogue:(assume we have run through five minutes of privacy statement, details of child, various other details which we go through each and every time we call, serial numbers on the back of each meter in the tiniest font have been supplied, as you were smart enough in the middle of your son’s hypo that morning to remember to take a picture of the back of his 2nd meter and you even manage to simultaneously hold down two buttons on the meter on the tiniest ledge imaginable so as to be able to give the details of the error codes.)

Teacher: ‘Yay, finally a human! You are a human right? Great! My son has two of your meters and both appear to be playing up. On one meter, he repeatedly gets a message that the drop of blood is not big enough when it very clearly is whereas the other emits a strange squeaking noise when the cassette rotates.’

Lady – ‘Let me run through the method you and your son are using. No, please don’t stop me even if you think you know what you are doing, it’s amazing how often people are doing the wrong thing and your son has gone through a large number of meters which really does make me wonder.’

Slightly narky teacher– ‘We have been through this so many times that I could do your speech for you and I now only have 5 minutes left so can you please just put through the order for two new meters and I promise I will send back the old meters. Yes, my son is a teenage boy and so may not be the most precise and careful creature but he does care about his diabetes and having correct results. No, putting his meter in a little tub would not be an option as he carries it in his pocket when he goes from class to class. Yes, I will suggest that he treats his meters with great care and does not launch his school bag across rooms or sit on his bag if his meter is in it. Now about those new meters, are you going to send them?

Accusatory Lady: ‘Have you been following the correct procedure for inserting new cassettes and also do you follow our cleaning instructions from the back page of the manual ? Let me talk you through exactly what that is and you can follow on the meter you have with you. 

Defensive teacher: ‘For the love of God, can I have two new meters or not? I now have one minute left, I have nothing left to say to you. Are you understanding how stressful this is? I would love it if my son changed to another type of meter as I think there are better models than yours for him but he wants this type as he is comfortable with how it works. He has diabetes, not me, so I am respecting his wishes but, tell me now, are you going to send me two replacement meters as I need to go?’

Placatory Lady in a voice dripping with syrup : ‘I totally understand what you are saying and I will be sending you out two new meters with the understanding that you follow the correct procedure when changing the cassette and you promise me that you will frequently utilise the cleaning method using the cotton bud which we discussed earlier.’

Sarcastic teacher: ‘Thank you so much for your help, I look forward to receiving the meters and will ensure all protocols in relation to cassette changing and cleaning will be followed with the utmost care and attention. There’s the bell. I have to go!’

If there had been a concrete wall in front of me at that moment, I swear I would have found great comfort in repeatedly head butting it until I drew blood but instead, I picked up my bag and headed to my class, ignoring my rumbling stomach. I keep reliving that conversation and wondering if I should have done it differently.

OK, NOW FOR THE FUN PART! LET’S TURN THIS CONVERSATION ON ITS HEAD!

Set the scene: 2 unreliable BGL meters, one teacher, one service centre lady.

Phone rings three times and is answered by a lady with a calm, understanding voice who simultaneously manages not to sound patronising. 

Lady: Hi, how can I help you?

Teacher: Hello, my son’s two BGL meters are unreliable and I’m worried about his using them. Would you be able to sent me two replacements please?

Lovely Lady: Sure, please give me the code on the meters….. ok, that’s great, I’ve got all his info here. Is there any feedback that you would like to give me about why these meters might be unreliable? We are always striving to improve and it must be very stressful for you to feel like your son isn’t safe.

Grateful teacher: Look, it’s hard to say. He is a teenager and this is a delicate piece of equipment. I don’t want to blame anyone. I just need two replacements.

Wonderful Lady: Not a problem. I will get them both sent off to you tomorrow. I can see your son has had diabetes for a few years so I’m sure you both know what you are doing. Please let me know if there’s anything else I can do for you?

Ecstatic teacher: That’s perfect, unless you happen to have three teenage girls who may be looking for a life partner in a few years. You sound like a great woman!

Future mother in law of my sons: Sadly not! I too am the mother of three teenage boys. The struggle is real!

THAT WAS FUN! IT’S GREAT TO DREAM!